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    Nursing Home

    Dear MND Community,

    My husband's condition has advanced enough that we are considering a nursing home. The challenge is that he needs personalized one-on-one care at all times and is 53 years old. Many homes that I have called do not support one-on-one care and won't accept patients that young. The CCG is looking for NHS-supported ones but I am trying my own search for any high-quality place (private self-pay included) that will accommodate his needs and age. We live in London, so ideally it would be in Greater London area. If you have any recommendations, I would appreciate it. Thank you.

    #2
    eknebel worth checking out the Care Quality Commission (CQC) website for any nursing homes near you that are rated outstanding (rare) or good. You might have done this already...
    Anyway you can read inspection reports on the web site...gives a rough idea what's offered. Good luck with your search. 👍
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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      #3
      I'd be interested to hear how you get on as I am 56 and when my hands go I will need the same level of care. Unless I take a more drastic solution. 😉😁😘😍xx
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

      Comment


        #4
        eknebel A warm welcome to the forum.

        If you haven't specifically searched for nursing homes in London specialising in neurological care, that's a good starting point. They have experience in neuro conditions, PEG tubes, traches etc and also tend to cater for adults under 65yo.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #5
          eknebel
          Hi, would 24 hour care at home be an option?I am not sure if your husband has been awarded NHS continuing Heath care funding?If so that could provide NHS care at home OR in a nursing home with no cost to your husband.

          Did your husband have an assessment that identified he needs one to one 24 hour care or is it is clear to you both that one on one 24 hour care is needed?

          I know from my hospital social work career when I was part of the assessment process not many people were deemed by NHS as needing 24 hour care by a nurse on a one to one arrangement but they did need nursing home care which rarely provided one to one 24 hour care.Most had night time care needs( such as changing position regularly, PEG feeding overnight, continence care, checking breathing apparatus, mouth care etc)but this was anticipated to be managed by regular interventions ( like in hospital) but not by a nurse being by the persons side all day or night)

          LindaB gave you a good suggestion to look at CQC website.

          In effect any nursing home that could offer one to one 24 hour care would need to employ 2 extra staff at least to cover day and night care.This would be factored in to the cost of fees.The staffing ratios in nursing homes would not allow for one to one care day and night as this would mean other residents wouldn’t get the care they need.

          It might be worth talking with a manager of any “high quality” nursing homes and explore why you think 24 hour one to one care is needed.Then they will explain what’s on offer nursing care wise.
          If care at home is an option again it’s worth checking with palliative care team or local hospice team what help could be provided.

          We all learn from forum members so it would good if you have the energy to let us know how you get on.

          Best wishes to you both
          Mary




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            #6
            With Direct Payments Matt, you can keep your fave carers, even send them a 'Thank You' card.

            Of course, my app will make it a lot easier but I am working as fast as I can.
            Copyright Graham

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              #7
              Yes I think we are at that point too. Our back up plan was a Leonard Cheshire home. Hubby had a weeks respite there and they were excellent. Sadly that home is closing and they aren’t taking anymore admissions. But it might be worth seeing if there is one in your local area as they specifically for younger adults.
              One of hubby’s consultants wants him to go into hospital for a couple of days but says he would need a critical care bed unless me and his careers go in also.
              It is very difficult.

              Comment


                #8
                Music man's wife ....Hi , Why does the consultant want your husband to go into hospital?

                I think a critical care bed it’s the same as intensive care though.
                I was thinking that if a Leonard Cheshire home met your husbands needs recently why can’t a hospital without the need for you and carers to be with him???( of course you may want to stay in hospital with your husband)

                Sounds odd that consultant thinks a critical care bed is needed AND you and carers are needed to be with him doesn’t it.?Not sure if his current carers are trained in critical care.

                Is it because of communication problems ie can your husband talk?

                When I went in to hospital for a RIG fitting my husband was invited to stay with me purely as the ward was beginning to promote this with their MND patients.I must say it was good to have him with me and allowed continuity of our usual routine .

                Best wishes
                Mary9

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                  #9
                  Being mute I have seen and experienced both the good and evil side of staying in hospital. On balance I wouldn't recommend anyone who is mute a stay in hospital in England. 😡😰😤🤐xx
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                  Comment


                    #10
                    Originally posted by Music man's wife View Post
                    Yes I think we are at that point too. Our back up plan was a Leonard Cheshire home. Hubby had a weeks respite there and they were excellent. Sadly that home is closing and they aren’t taking anymore admissions. But it might be worth seeing if there is one in your local area as they specifically for younger adults.
                    One of hubby’s consultants wants him to go into hospital for a couple of days but says he would need a critical care bed unless me and his careers go in also.
                    It is very difficult.
                    Would it be an option to go into your local hospice rather than hospital?
                    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

                    Comment


                      #11
                      Originally posted by Mary C View Post
                      Music man's wife ....Hi , Why does the consultant want your husband to go into hospital?

                      I think a critical care bed it’s the same as intensive care though.
                      I was thinking that if a Leonard Cheshire home met your husbands needs recently why can’t a hospital without the need for you and carers to be with him???( of course you may want to stay in hospital with your husband)

                      Sounds odd that consultant thinks a critical care bed is needed AND you and carers are needed to be with him doesn’t it.?Not sure if his current carers are trained in critical care.

                      Is it because of communication problems ie can your husband talk?

                      When I went in to hospital for a RIG fitting my husband was invited to stay with me purely as the ward was beginning to promote this with their MND patients.I must say it was good to have him with me and allowed continuity of our usual routine .

                      Best wishes
                      Mary9
                      Mary, the consultant said he would need a critical care bed *unless* me and the carers went in with him. He last had respite 18months ago and has deteriorated a lot since then. The consultant wanted to try him on the modern version of an iron lung among other things.

                      Comment


                        #12
                        Music man's wife .
                        Thankyou for the reply.It cleared up my lack of understanding.

                        So sorry your husband has deteriorated a lot and hope he gets the care he needs to keep comfortable with symptom relief.
                        Best wishes to you both.
                        Mary

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                          #13
                          Originally posted by Mary C View Post
                          Music man's wife .
                          Thankyou for the reply.It cleared up my lack of understanding.

                          So sorry your husband has deteriorated a lot and hope he gets the care he needs to keep comfortable with symptom relief.
                          Best wishes to you both.
                          Mary
                          Thank you Mary.

                          Comment


                            #14
                            Hi there Eknebel. We are going to look at a nursing home next week it's about an hour away. There is another one less than 10 minutes away however it has a terrible reputation.
                            They aren't convinced they can meet hubby's needs but we'll go and see.

                            Comment


                              #15
                              Music man's wife
                              Good luck with the nursing home viewing.Presume you have read the nursing homes CQC reports?

                              Its such a big decision finding a nursing home for respite or long term care.Then there is
                              the whole funding issue.( self funding,Social Services funded, NHS Continuing health care funding).
                              Really hope you find a nursing home than can meet your husbands needs.

                              Best wishes
                              Mary



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